Chronicles of Life with Multiple Sclerosis
I’ve decided that I can’t date/marry a Spoonie. We would just shrivel up and die together. But I suppose that’s the most romantic way to go. Even though we’d be moaning and wanting to hold each other but not being able to because of the pain… Depressing yet beautiful… I have mixed feelings.
I’ve had this same conversation with myself… and then I wondered what healthy person would jump into this sort of mess willingly.. hmm
In slight addition to the aforementioned, I go through phases of completely longing for human affection and then switching to total misanthropist mode. Now, i’m in my ‘longing for affection’ mode. Maybe it’s because i feel so completely empty inside i just need something to bring me back up to earth, and i feel like maybe if i had someone who was genuinely interested in me as a person and not my fucking symptoms/asthetics/limitations/failures/freakish behaviour as a result of the previous, then maybe i might actually have a reason to feel almost human like again. I miss conversations that would end in the early hours, I miss that connection, I miss just feeling wanted and needed and even special? I miss it. I’ll never get that back because I have declined in more ways than one, physically, literally, metaphorically, mentally etc…everything you name it and i have well and truly declined in it. So i’ll never feel comfortable in that scenario again because of how anxious and paranoid and depressed and ugly i have become because of my ever present tortorous pain levels and distressing symptoms hacking away at me like a chainsaw. Yet still i long for such affection even though I wouldn’t know what to do with it, probably push it away lest I let down my guard and become exposed and vulnerable and that terrifies me because i’m not ready for that. AH contradicting life and times of myself.
I want to write a novel, as well. I feel like everything in my head, needs it’s own book. I can churn out sentences like my body churns out it’s undigested food. In seconds. meh.
Currently, in bed, with a starbucks. Only typical. (:
Health wise: I’m better than I was before my last hospital visit last week however not as good as I was when I left rehab over two weeks ago.
So Im filled with mixed feelings: I’m happy I’m better but rather discouraged I have regressed…again.
My walking is what seems to be the least affected. I still get around the house with my arm crutches and wheel chair for outside visits. My legs will buckle or I’ll have a little limp but this is I guess to be the new “normal”.
My arms/fine motor skills are dependent on factors, such as how tired I am, if I’ve taken my meds, etc. It is rather frustrating when you tell your arm “reach for this” and the brain just can’t get the message there. I find myself having to come up with clever ways to do normal things. Example: text mom to help. (: (Love you mom!) I also am still experiencing quite a lot of tremors in my hands when not in “resting” position. This makes it challenging to eat, write, fold clothes, life. But I see it getting better daily.
My speech is probably where I’ve noticed the least progress. One of the things I have always loved to do (since I was about 1) has been talking. To not have that ability is quite challenging. The upside, sparkle side of it is though it has turned on my listening skills. Listening to music, to others, to mother earth, to God, to happy vibes, to whatever it is around me. This I am thankful for.
Fatigue. Let’s just say I slept 14 hours last night. We will leave it at that.
Cognitive. I have noticed change in my short term memory but this is only natural due to where the lesion is as well as due to adjusting to medications. This has been improving.
MS is a challenging disease for everyone that has it. But for me, what has been most challenging is its unpredictability. I have no idea how I’ll feel in an hour, 10 minutes, next week, next month. I’m a planner. Having your life be so “unplanned” is a huge burden for me.
Now, do I sparkle? Well, of course. (: My spirits are high. I am thankful that I can see progress daily that shows improvement. I am thankful I have one of the best MS doctors looking out for me as a patient. I am thankful for the MS Society and all they are doing for me. I am thankful for so many things.
I am thankful I can still sparkle. Which is hard for a lot of people who have chronic diseases. I contribute it all to your support, in whatever way you share it!!
So thank you, please keep it up, and know that I have my good friend St. Therese looking out for you too (all my readers). Religious or not, having people in high places sending you good vibes cant be a bad thing. (:
Have a glorious day, hope for all those that have MS and HOPE FOR A CURE!!!
PS: side note: send some support to my little brother as well. He is at summer camp and we just learned last night that he has second degree burns on his foot due to boiling water being spilled. poor kid. his spirits are high and doctors say its healing nicely!
“when it rains it pours. but you wait and hope for that rainbow”
and even if you can’t have faith it’ll work out.. just resolve to keep on trucking regardless. Eventually you’ll forget you’re walking through a swamp and start to enjoy the smell! (like a floridian! ha! you’ll also ignore the snakes that aren’t within .5 ft of you)
some days Zoya and I are really on the same page… just lift your head and look around if you’re concerned about whats happening… otherwise its not worth getting out of bed.
Though I’ll say that that face is probably the one thing that forces me to get up even when the pain is the worst… cause having to pee seems less important in relation to that wittle face waiting for her nom noms.
I’m feeling so weak right now… Too much stress, I hurt people I never wanted to hurt and I am so tired, I have the feeling my legs can’t support me anymore.
*hugs* wish I didn’t understand as well as I think i do.
I don’t even fucking care if the government or what ever the fuck it is comes after me. This is so messed up. If someone is deathly ill with a diseases like Cancer, Multiple Sclerosis, etc, why the fuck wouldn’t you give them the health insurance they need? At the very fucking least a nurse to come help them out?! Even once, twice a week to help give their families the peace of mind for one or two days that someone is checking in a taking care of them. Sorry, but if you’re too fucking concerned about MONEY, think of how these people must feel. Spending around $100 for medication that is supposed to help with pain, and distress. What happens when they can’t fucking afford the medication? OH THAT’S FUCKING RIGHT! They get rushed to the fucking hospital! Guess who now has a $600+ medical bill that they CAN’T FUCKING PAY? As if we don’t have enough to worry about, now there’s the worry of money. As if these people don’t have CHILDREN to take care of, now they have to take money out of funds that SHOULD go towards helping their kids into/through college, SHOULD help their kids get the medication they need, SHOULD help their kids when they need to go to the doctors. Fuck.
This country is fucking fucked up. Economically, we’re all fucked over, the very least that can happen is help out out the people who are going to die with in the next year.
Why can’t you do the goddamn right thing and help these people out? OH RIGHT—- IT’S ALL ABOUT THE FUCKING MONEY IN THIS COUNTRY. Fuck you.